Tag Archives: Emma Zurcher-Long

I’m guest blogging on Emma’s Hope Book this morning to introduce all of you to the just launched IndieG0Go Campaign for the documentary Emma is co-directing with Julia Ngeow, producer Geneva Peschka, and executive producer Marquise Stillwell of OpenBox. (EEEEEEEEEEE insert happy snoopy dance here.)

Here’s the link to the campaign and the documentary clip. It’s beautiful. Just beautiful.

Okay so now you’ve seen the teaser and maybe you’re thinking what else can I do? There’s so much, starting with share this with everyone you know. Share it on all your various social media networks. And finally, for anyone who can, please donate, even if it’s ten dollars, every dollar will help complete this documentary.

Last week in preparing for the conference Emma and I are presenting at tomorrow in Toronto (Autism Rocks), Emma typed, “I will say things that are not truly what I am thinking and my true thoughts are not always communicated. My talk is simple, yet my mind is intricate. Much of my life is unspoken.”

Educating resting minds means patient repetition of mobile thinking. My mind is lightning fast in a body whose parts often do things that give people a different impression.

How best to sway doubting minds?

They say write what you know and what could be better than having a film crew follow you around to document the lightning and the thunder.

Mom will add some things about the documentary, Unspoken, here now:

While Emma just wandered off, confident in my ability to take the baton she’s handed me and run with it, I’m not as sure. So be kind to me. I’ll do my best, but first, a couple of things about the documentary, Unspoken.

Unspoken is the name of the documentary Emma is co-directing with the very talented Julia Ngeow, produced by the equally talented Geneva Peschka and executive producer Marquise Stillwell from Open Box. This is Emma’s project. Not mine. And if you’ve never heard of any of these folks, please go to the links I’ve provided. Emma is working with an exceptionally talented group of people!

When Emma recently had a meeting with Unspoken’s editor, Marco Perez, he asked Emma, “Why are you doing this documentary?”

Emma typed in response, “This is my life. Mostly the positive, but sprinkled with salt on tough beliefs thought by others who decide they know what it’s like to be me or worse, don’t care. This is about prejudices, segregation, human rights and fear.”

I then went on an impassioned, okay more like enraged, rant about societal expectations and so-called norms, the way autism and Autistic people are typically spoken of and to, how the voices of Autistic people are continually silenced, how infuriating it is, not to mention insulting (to say the very least) to Autistics and when I stopped to catch my breath I became aware of how loud my voice had gotten. I mumbled something about how I obviously felt strongly about all of this and would stop talking now, thank you very much.

And then Emma typed, “Let’s change people’s perceptions with love. Can Mom be angry? Yes, because she loves intensely.”

Yeah, because that’s the way Emma is. And I gave birth to her. And how she is, the way she is, astonishes and amazes and I could go on and on and on and on about how proud and grateful I am to know such a person as her, let alone be her mother, but then that just might fall into the whole ranting thing again and I promised I wouldn’t do that. So I’ll just stop now. Again. Really. Enough.

Unspoken is in the hands of the very capable and extremely gifted editor Marco Perez. Everyone is hoping for a release date sometime in 2016.

Unspoken has a Facebook page – Unspoken Documentary. So go over to Facebook and show it some love. Okay there is no “love” button on Facebook, but the “like” button works really well. (Or/and you can leave some of that love here too.)

Imagine for a moment if you had an idea. It was an idea that was in keeping with a conversation taking place by others in the same room as you, but when you opened your mouth to share your thought, instead of using words that would convey what you were thinking you said something that sounded like, “Peacock!” Not only did you say “Peacock!” but your voice was loud, some would suggest you were shouting, even though you hadn’t meant to shout, even though you weren’t thinking of a peacock, that was the sound that came from your mouth.

Now imagine that, in addition to this, you smiled and maybe laughed too. Maybe you laughed because as you said what sounded like “peacock” you were also hit with a memory of a time that was funny, or maybe saying those two syllables made you happy, maybe the act of saying them made you laugh, or maybe you laughed, but nothing struck you as funny, the laughter was merely a response to anxiety or maybe it wasn’t any of these things. Maybe the laughter just escaped from your mouth, unbidden.

Whatever the “truth”is about why the person suddenly shouts what sounds like “peacock!” and then laughs, while others are having a conversation about global warming or are discussing their concerns with a project they’re working on or are talking to each other about what to have for dinner, they are unlikely to assume the peacock shouter is listening to their conversation, much less that they have anything relevant to add. In fact, the people having the conversation may regard this outburst as an intrusion, or an unwelcome distraction. Or maybe they don’t, instead they stop their conversation and smile, or laugh and say something like, “is that funny?” “Are you thinking of something funny?” or “Oh! Do you like peacocks?” and when all of this is met with silence or some other utterance unrelated to both peacocks and the conversation they were having, they continue with what they were saying to the other person.

Richard is good about saying to me, “we should ask Emma” or “Emma, what do you think?” or “Let’s find out if Emma has anything to add” or just turning to Emma and saying, “Hey Em, we’re talking about _____.” Including Emma in our conversations is not something we regularly did. It’s not that we never did, it just wasn’t something we regularly did. Including Emma in conversations was not something we once considered doing, not because we didn’t want to, but because it didn’t occur to us that she was listening and understanding, much less had something she might like to add. This is where her being able to write her thoughts has changed everything.

Once we began presuming her competent we began including her, but as she didn’t have a way to express herself, the – “do you have something you want to add? or so what do you think?” questions were not asked of her. But once she began writing, all bets were off. Suddenly and quite dramatically her words propelled me to reconsider even more what I’d once thought. All of my assumptions, all those misunderstandings, I now view differently. Now when Emma shouts, “peacock” I do not assume she is interested in talking about the colorful bird. She may be, but she may not be. But and this is a big but, I’m able to ask her and she is able to reply.

Emma has written often that the words that come out of her mouth do not always reflect her thoughts. I used to think that whatever she said out loud, was indicative of what she was capable of and, in addition, was what she intended to say. My misunderstanding of what was going on for her made for a great many misunderstandings. Had Emma not found a way to communicate, had she not found a way to write what she knows, thinks and feels, many people would not question that her spoken language is representative of her mind. They would not be able to believe that she has the complex and brilliantly observant mind that she has. For most people this is a very difficult concept to fully grasp. It has taken me daily exposure to such a mind to begin to stop making incorrect assumptions about not just my daughter, but all people I meet who do not speak or whose language is not an accurate reflection of their thoughts.

Both facilitated communication (FC) and Rapid Prompting Method (RPM) while different in practice, are based in a presumption of competence and both are often a bridge to the ideal goal of independent communication. There are those who may not be able to achieve full independence because of physical challenges. It bears repeating, however that the eventual goal for all who are physically able to, is independence. And yet both methods are criticized. In fact, no matter what the initial method used to learn to type by non-speaking, Autistic people who have gone on to type independently, people like Carly Fleischmann, Tito Mukhopadhyay, Sue Rubin, Jamie Burke, Ido Kedar and so many others, there are those who continue to question the authorship of their words. Even though no one touches them as they type. Even though there is no physical contact of any kind as they write. Even though they all talk about the issues they must contend with on a daily basis, things that are specific to them and the challenges they face with a mind and body that are often not in sync.

In the case of FC there are a number of people, now independent, who began typing to communicate, but for physical reasons need the help of another person to provide resistance or to help with physical challenges. As with Applied Behavior Analysis (ABA) where a child is given hand over hand prompts that are hoped to be eventually faded, so it is with FC. However FC is continually attacked for using, often less, physical prompts than ABA practitioners use. Some people like Barb Rentenbach, Peyton Goddard, Jennifer Seybert and Tracy Thresher are now typing with a finger placed on their shoulder or the middle of their back. If one goes back to how they began to type, this shows enormous progress. All of them are intent on becoming fully independent and work extremely hard in trying to reach this goal. Yet, it is interesting to note that few people object or question ABA’s use of hand over hand prompts. What is good for one, seems to not be good for all. Why is that?

Carly Fleischmann who types independently wrote, “I don’t have a hand up my butt like a puppet…” Despite her words, if you google “Carly Fleischmann” the second search term that comes up after “Carly Fleischmann blog” is “Carly Fleischmann fake”. Oddly, when entering “Stephen Hawking” into google, the search terms are “Stephen Hawking quotes” and “Stephen Hawking black holes”. Why is it that Carly Fleischmann, who types independently, is viewed with suspicion, while Stephen Hawking is not?

RPM, the method created by Soma Mukhopadhyay, does not use physical prompts at all. No one touches the person writing, but instead a stencil board is held in front of the person writing. The stencil letter board, it is hoped, will be eventually faded and replaced with a laminated letter board with the goal, in my daughter’s case, being able to move to a qwerty keyboard, which is how Emma now communicates with me as well as with the person she has weekly RPM sessions with. Still, there are those who insist that no matter how steady the letter board is held, the person holding it is manipulating it ever so slightly and enough to influence the person writing. Or, as is the case with Carly and others who type independently, it doesn’t matter, the fact that they are not able to speak seems to be all people need to discount their words, no matter how they communicate. All of this would be laughable if it were not for the tragic fact that people’s voices are being discredited and silenced.

My friend Kerima Cevik, of the blog The Autism Wars, recently wrote “My Standing Position of Facilitated Communication” and posted it on Facebook. It immediately went viral and brings up a number of excellent points consistently ignored by those who seek to discredit FC. Please read it. I find it incredible that people, almost all of them psychologists, just as Bruno Bettelheim claimed to be (and not neuroscientists) continue to come up with all kinds of theories regarding any number of things involving autism and Autistic people, things like Theory of Mind and Cognitive Empathy. All of these are “theories” and not scientifically proven as fact, yet they are treated as fact, while things like RPM and FC are ridiculed for not being scientifically proven and dismissed, while other methods like ABA are applauded, funded and given a golden seal of approval. One more question to consider, why is it that people who are aphasic are not immediately given ABA? No one recommends ABA as a therapy for someone who has had a stroke and as a result cannot speak.

I urge all of you to consider, regardless of what other people decide they believe, if a child cannot communicate through spoken language what are their options? Whatever the approach is, whether it uses pictures, hand gestures, eye movement, pointing, or some other form of communication I have a series of questions I ask.

I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.

If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now. Please feel free to share widely.

As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”. Both agreed. What has occurred as a result is nothing short of incredible. Understandings have been forged, exchanges of ideas and beliefs have been made. They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer… Many people take these types of conversations for granted. But we do not.

My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).

As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on. At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic. As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.

Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?” (I know, talk about asking the obvious…)

I am painfully aware that by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media. If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change. So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.

This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made. And what about those who do speak, are their feelings not important? These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear. Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.

“Come Emma, let’s go in the other room.” I suggested. Once outside I asked Emma if she wanted to discuss the video Ari was referring to. Emma wrote, “The video has a mom who is lost and cannot rationalize hope.” Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.” Read that again –

“Autistic people are not viewed as able beings, this view makes us suffer.”

After Ari’s terrific talk, Emma and I were introduced. Watch Emma writing her final sentence regarding autism and acceptance, which says it all…